Here’s the background to a health issue I alluded to in a recent post. It won’t apply directly to many readers, but it will clue you up on my own situation. There’s a distinct gender aspect to it, but I don’t see any way round that.
Short version: at the very start of the year we were told I’ve developed prostate cancer. After lots and lots of reading and talking and thinking I’ve opted for a course of twenty sessions of radiotherapy later this year. This is expected not just to control the cancer but eliminate it completely.
Much longer version: to be honest it wasn’t really much of a surprise at the very start of the year to be told that I have prostate cancer. My PSA reading had been going up for eighteen months or so; its traditional level was around 3 and soon readings were coming in at 6, 8, 9, and eventually 12, so clearly something was going on. There were plenty of reassurances (“we don’t worry too much if it’s below 50”) but it was pretty obvious the hospital at Stoke Mandeville was sure there was something there and they weren’t going to stop until they found it. So I had an MRI scan, which was an unusual way of starting Sunday morning but at least meant there wasn’t a parking problem. The scan didn’t find anything but the PSA continued to rise and the next step was a biopsy (I’d been led to expect this would be painful but in practice it was no more than rather uncomfortable).
The whole investigation took nine months or so, sometimes slow (“see you in three months”), sometimes quick (for the MRI I saw the Head of Urology on the Tuesday, had a phone call the next day, fixing the scan for the weekend). There were various messages that looked encouraging: “did not reveal any significant abnormality”, “has not shown any clinically significant tumour”, “I feel his prostate is clinically benign but …”. Nevertheless, however positively you read them there always seemed a little wiggle room. There was never any suggestion that they were satisfied and were going to stop looking; it was always a case of “we’ll see you again in three months”, or “next …”.
It was the biopsy that finally located the problem, and on January 2nd we had a session with the Macmillan nurse who broke the news. Not all the information sank in, but what I did take from the session was his enormous positivity. The approach was very much “You get ill, you get treatment, you get better”. One of the better questions I asked was “On a scale of 1 (dreadful) to 10 (excellent) how should I feel about this news?” “A definite 9” he said. That sent me away feeling much better than I might have done – even when my phone rang the instant we got out of the door and with exquisite timing the plumber said “Happy New Year, Alan, how are you?”
I left the hospital with an armful of booklets, and soon had plenty more, courtesy of the charities and a friend or two. From this point, things went downhill a bit. I was acquiring more and more information, but I couldn’t evaluate it and get it all into focus. This hit the low point when I had my first session with the oncologist. He presented me with three strategies for dealing with things, and scrupulously avoided offering advice (I think now that perhaps I should have asked him for a recommendation, but I didn’t, and spent the next two or three months in a total whirl, deciding first on one option, then another, and then back again).
Fortunately, prostate cancers tend to be very slow growing so there’s little urgency to commit yourself quickly to a treatment plan. Indeed, the first strategy option is simply to do nothing at all, keeping an eye on things and not intervening until it looks necessary. This is the strategy of “watchful waiting” and for many men is perfectly viable not just long-term, but permanently.
The second strategy option is hormone therapy, administered as injections effective for three months at a time. One consultant said this stops the cancer “in its tracks”. He was right; my PSA reading had gone as high as 12 and the first treatment of hormone therapy brought it down to 0.33, lower than it’s ever been.
However, there are disadvantages to hormone therapy. To stop the cancer growing it blocks your testosterone and obviously for any male there are potentially going to be side-effects. It also only works for a limited period; the Head of Urology suggested perhaps three to four years; the oncologist thought this was pessimistic. Actually, I found the father of one our friends has been on hormone therapy for best part of twenty years. But perhaps most significant of all is that while hormone therapy may stop the cancer growing it will not shrink it or destroy it, and sooner or later it’s likely to start growing again.
The third option is to tackle the cancer head on and destroy it. Now this is where information overload really hit me. Prostate cancer is a high profile illness and there are many techniques and oodles of research projects. Cryotherapy, ultra-sound, brachytherapy, surgery, radiotherapy, …. Of these, radiotherapy was the only one offered to me, but in that first visit the oncologist was so determined that I should make up my own mind that he emphasised the downside (including potentially awkward side-effects involving the bladder and bowels) and indeed the negative aspects of the other strategies as well. (Actually, in more recent meetings he’s been much less wary of side-effects than he was back in February.)
So as spring progressed I had a growing mountain of information – but information on its own wasn’t much use if I had little ability to assess and evaluate it all. Should I opt for the waiting, for the hormone therapy, or something more aggressive – and if so, should I take the radiotherapy or look into other methods, possibly involving private funding? The charity helplines were warmly supportive, but for what I wanted were completely useless; understandably they couldn’t advise on individual cases. I now know, but didn’t then, that my local surgery has a dedicated prostate nurse I could have talked to. My own GP was very hostile to the use of radiotherapy, but then he was clearly influenced by a patient he’d seen the previous day for whom radiotherapy had proved unsatisfactory.
What I desperately wanted, and with the wealth of information there must be it’s surprising this doesn’t exist, is an app of some kind into which I could plug all my details – PSA, age, cancer rating, etc – to give me an idea of the choices other men in my situation were making. I wasn’t necessarily looking for how effective the treatments were, simply to get a feeling for how many people did what. Better still, of course, would be an indication of life-expectancies – though the overall survival rates were so good that I comforted myself with the fact that actually it looked rather difficult to make a really poor choice.
It took until the middle of May, but eventually there were two light-bulb moments. It suddenly hit me one evening during a jazz club concert that rather than attempting to compare and evaluate the three strategies I should be asking a different question – what was my fundamental goal? The answer was obvious – in recent years my wife has suffered vary considerably from arthritis which has greatly limited her mobility. Once I focused on this it was obvious that my strategy can only be to make sure that I am around for as long as possible to make life easier for her. I put things in these terms to the oncologist and his reply was instant – it had to be radiotherapy.
But he did suggest I visit a colleague in Oxford who’s an expert in the alternative strategy of ultrasound. I’ve never previously used a private consultation, but this turned out to be a brilliant way of spending £250. In effect he was giving a second opinion and his views were identical to the Stoke Mandeville oncologist. Though we were discussing ultrasound he gave me the second light-bulb moment by volunteering his opinion that in practice radiotherapy was much the better option.
From the very start the survival figures had looked hugely encouraging. Even the most pessimistic figures suggest that around 80% of all prostate cancer sufferers survive at least ten years. Given that 78-year olds have plenty more things to die of, 10+ years survival looks pretty good. The Oxford specialist put things dramatically – “If you have radiotherapy then your chance of dying from prostate cancer in the next fifteen years is less than 1%”.
My Stoke Mandeville oncologist agreed with everything the Oxford expert had said, so though it’s taken a heck of a long time at least I’m now in no doubt about how I should go ahead, and we signed the forms a few days ago. I’m expecting a twenty-day course of radiotherapy at the Churchill Hospital in Oxford, perhaps in November. I’d have rather liked to have got things out of the way before October 31st, but the timescale makes this unlikely. Still, with luck I won’t be having to drive the 35 miles to Oxford (and both of the experts have said I’ll be able to drive myself) throughout January or February.
I’m a little bit bemused that it took me so long and very grateful I was able to take so much time to make my choice. As a cancer sufferer I’ve really felt a considerable fraud; others have ghastly versions of the disease while I have no symptoms, no suffering, and the expectation of a complete cure. And though I’d rather not be in this position, people are already treating me as an expert and beginning to ask me for advice. Given the demographic profile of my friends and contacts it seems pretty likely that others will eventually find themselves in the same boat. For what it’s worth, here are some suggestions – some of these are things I did OK, others I should have done better:
[a] take wife / partner / relative to important sessions, not only for support, but to have a second pair of ears, (and take a notebook as well – I have a rather full A4 ringbinder),
[b] work with both the hospital and your local GP / surgery, and not only with doctors but with their specialist nurses,
[c] don’t simply accept information, but ask for opinions and recommendations – you may not get them, but ask anyway,
[d] you may want to consider a variety of treatments – there’s so much work going on in the field that things are changing all the time,
[f] welcome experiences from friends, relations, colleagues,
[g] don’t lose sight of how amazingly good the survival rates are – I’ve even seen it suggested that those with prostate cancer actually have longer life-expectancies than men without!
[h] and when you’ve got all this information from dozens of sources, you’ll need to evaluate it all and come up with your own decision.